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I’ve learned so much about following Christ over the almost twenty years that I’ve been dealing with this frustrating disease known as ALS. It’s been a long and, in every sense, a painful road to travel. But, from a Christian perspective, it’s these difficult trials that are supposed to shape and perfect us:

“Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.” (James 1:2-4)

One word stands out to me when I read the above passage – perfect.

Perfect: being entirely without fault or defect: flawless b: satisfying all requirements: accurate.

Jesus did say that His followers were to be perfect (Matthew 5:48). That’s a tough standard; the toughest of all standards. It’s kind of funny to think about now, but before making a commitment to follow Christ, back when I was still committed to following myself, Matthew was the first book I read; I’m kind of surprised I didn’t throw that Gideon Bible across the hotel room when I came to that part about being perfect.

I was so far from perfect back then, but I’m still so far away; “perfect” seems as far from me as a tiny star in the darkest of nights. But it was a tiny star that led the kings of east across the wilderness to Jesus. Like that tiny star, “Perfect” is unattainable for even the best of Christ’s followers, but it should always be our focus. I think that’s what Jesus meant.

Even late in his life, after suffering through many difficult trials, the Apostle Paul knew that he still wasn’t perfect, but he still had perfection as his goal:

“Not that I have already obtained it or have already become perfect, but I press on so that I may lay hold of that for which also I was laid hold of by Christ Jesus. Brethren, I do not regard myself as having laid hold of it yet; but one thing I do: forgetting what lies behind and reaching forward to what lies ahead…” (Philippians 3:12-13)

If I asked for some examples of spiritual imperfections, most of us would give examples like gossiping, angry outbursts, impatience and so many other faults of our words and/or actions.

One would think, as I once naively thought, that if a person was unable to speak or move, it would be easier for him or her to become spirituality perfect. As someone who can’t speak or move, I now know this isn’t the case.

Religion is all about right and wrong actions, but Christianity is a lifelong journey of perfecting the spirit and the soul (mind, will and emotions) of man. Actions are important, of course, but only if done with the proper motives.

Before ALS paralyzed my body and silenced my voice, I wrongly believed the above passage only applied to our actions. Now I know different. ALS (not being able to move or speak) has forced me to focus on my spirit and thought-patterns. This can be a frightening process, like confronting long-entrenched demons. But, on the road to becoming perfect, this is a process that we all must go through, and it shouldn’t take a terminal diagnosis to force us into it.

Over these difficult years of struggling with this dreadful disease, I’ve discovered that the fruit of the Spirit, or lack thereof, is more about our inner man. Good actions can just be an act.

How do you know if your actions are directed from godly (perfect) motives?

The first and most important thing is to determine whether you’re doing the act to please God or man.

A people-pleaser will never be viewed as perfect in the eyes of God. Christians motivated by a desire to please God will be viewed as perfect in His eyes. But, their words and actions will not be viewed favorably by all men. Jesus is proof of this.

Jesus is the only perfect (flawless, sinless, righteous…) being that’s ever stepped foot on earth. He was despised by both secular and religious people. Keep that in mind when you’re standing up for what you believe; this is the greatest and most difficult action of all.

“For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus.” (Philippians 1:6)

Whether we’re going through the worst of times or the best of times, history and our own experiences show us that life does go on. This is true, but I don’t recommend saying “life goeson” to someone who is grieving the loss of a loved one.

“There is an appointed time for everything. And there is a time for every event under heaven — A time to give birth and a time to die…A time to weep and a time to laugh; A time to mourn and a time to dance.” (Ecclesiastes 3:1-4)

I thought about the above passage last week when our daughter gave birth to a beautiful seven pound girl on Wednesday, then a close friend died of cancer on Friday – “A time to give birth and a time to die.”

Those who are grieving and those who are rejoicing have this in common – life goes on for both of them.

It was a beautiful Friday afternoon in 1996 that the neurologist informed me that I had ALS and would likely be dead in three or four years (so much for predictions). I vividly remember driving home that day in stop-and-go traffic. I was exhausted after three long days of examinations so Mary was driving and I spent much of that long drive home staring out the window at the other drivers. I imagined that they were thinking about dinner or maybe they were making plans for the weekend ahead. In the midst of horrible news, when it seems that our life will never be the same, the world seems like such a cold and cruel place when you look around and realize that life goes on just as it always has.

Compared to life’s great highs and lows, day-to-day life can seem so trivial. When we experience the extreme highs and lows, we tell ourselves that we’ll never again settle for the trivial life. But our emotional or spiritual highs and lows gradually find their old balance, and we return to a mundane normalcy. I think this is the root cause of much of the addiction and depression we see around us; “lifegoeson” is difficult for many people to cope with.

What’s the answer?

Even for someone that’s been paralyzed by a horrible disease and can no longer eat or speak, “life goes on” can be a great message if you truly learn to “Rejoice with those who rejoice, and weep with those who weep.” (Romans 12:15)

I try not to focus on the personal and professional “highs” (or the financial gains) that I’ve missed out on over the last 19 years. Instead, I make a conscious effort to focus on the good things in my life, like our beautiful new granddaughter, and to share in the highs and lows of others. Living vicariously through others is not the life that I envisioned, but years ago I concluded that the only alternative was to throw a pity party and make myself and everyone around me miserable. I’ve been to several pity parties, and I didn’t like the company (me, myself and I) or the hangover of guilt.

Life is hard, but it’s much easier if we surround ourselves with people that won’t only rejoice with us in the good times but will also support us in the difficult times. I’m so thankful that Mary and I have family and friends like this.

For my daughter, her husband, their son and their beautiful baby girl, life goes on.

For the family of our friend that passed away last Friday, life goes on.

But the great news is that the friend we lost was a committed follower of Christ so life goes on for him also.

“My sheep hear My voice, and I know them, and they follow Me; and I give eternal life to them, and they will never perish; and no one will snatch them out of My hand.” (John 10:27-28)

“He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain…” (Revelation 21:4)

Ice Bucket Challenge Donations Top $100 Million in 30 Days compared to $2.8 million during the same time period last year (July 29 to August 29).

Mary looked at me like I was crazy when I told her that I wanted her to dump a bucket of icy water over my head.
“You might gasp and breathe in water and choke,” she warned. But after a few days of prodding she finally agreed to play her roll in the Ice Bucket Challenge. I was hoping that the ice cold water being poured over my head would cause me to jump out of my chair and run, like my Australian friend, Phil, but (SPOILER ALERT) unfortunately that didn’t happen.

Seventeen years ago, almost a year after being diagnosed with this horrible disease known as ALS, I was asked by MDA to participate in the local portion of the Labor Day Telethon. As one of the reporters was asking for donations to help cure ALS, he said, “It’s too late for Bill…” I know that sounds harsh, but it took everything Mary and I had not to burst out laughing on live TV.

Medically speaking, that insensitive reporter was right. I think that’s what made his statement so funny; there’s no need to state the obvious, especially when the dying man is sitting three feet away. Those diagnosed with ALS live an average of 3 to 5 years (I’ve always wondered why they don’t split the difference and just say 4 years). I doubt that the reporter or any of the doctors that diagnosed me would have thought I’d be typing a blog post with an eye-tracking computer 18 years later.

That’s the whole point, nobody really knows what the future holds. We hope and pray for a cure for so many horrible diseases, especially those that have devastated our life or the the life of someone we love. We may not know what the future holds, but we should do our best to leave the world better than we now find it. Yes, dumping a bucket of icy water over your head and/or giving a small donation to the ALS Association, might seem insignificant and even silly in the grand scheme of things, but I’m convinced that these people are trying to shape a better future for those suffering with ALS.

Before having ALS, I would have thought that it would be the big effects of this disease that cause the most frustration—things like not being able to walk and talk. But it’s losing your ability to do simple things, things you once did with little or no effort, that cause the most frustration. Imagine having an itch you can’t scratch or having a mosquito biting the back of your hand and all you can do is sit and watch as it becomes fat with your blood, leaving another itch you can’t scratch.

Being confined to a wheelchair and not being able to speak would be more bearable if I was able to read books, but even that once-simple pleasure is now impossible. I was especially frustrated with my inability to hold a book and turn its pages when I received a copy of a book titled “When God Intervenes” in the mail two weeks ago. This book was written by a friend named Dabney Hedegard, and I had been looking forward to reading it since she told me about it several months ago. Fortunately, Mary had also been looking forward to reading it so she volunteered to read it to me.

The reason I used the example of not being able to scratch an itch is because the book begins with Dabney visiting doctor after doctor and having test after test to determine what was causing the constant itching all over her body. (I began to itch just thinking about it). Every doctor said or inferred that Dabney was a Hypochondriac. She would soon prove all of those doctors wrong, the hard way!

Dabney endured the constant itching and the sleeplessness that came along with it for five tortuous months. Then, as Dabney retells it in the book, something happened that, by comparison, made her constant itching and the exhaustion seem like a minor annoyance: “I propped my feet on the couch and scratched across my belly, trying to chase away the tickles. In the silence of my apartment, I tried to nap. But my midmorning indigestion had progressed into a heavy weight against my lungs. The roll of fruit-flavored TUMS refused to calm the pressure. Then it happened. One gasp followed by strained constriction— as if someone had popped my lung. I banged my fist to my chest to pound out some relief. Nothing. Sitting up straighter, straighter, I struggled to suck in air. “I c-can’t breathe…”

Dabney’s husband, Jason, rushed her to the ER where doctors discovered a football-sized tumor in her chest; it was Hodgkin’s Lymphoma. In some cases, for some unknown reason, this type of cancer can cause the itching that she was experiencing. To complicate matters and add to the drama of this miraculous story, Dabney was six weeks pregnant with their first child.

This was the start of what would become a ten year trial; a decade of Jason and Dabney having their faith repeatedly tested and God intervening time after time with miracle after miracle. A ten year trial that included four near-death experiences and twice doctors telling Jason, “She’ll never make it through the night.”

“…we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint…” (Romans 5:3-5)

The above passage came to my mind when I read what Dabney said this book was about: “This story is about an ordinary girl in search of hope.” Mary and I saw that passage unfold in Dabney and Jason while reading “When God Intervenes.” This “ordinary girl” finds the hope that she was in search of and is now giving that hope to others through her public speaking engagements, her blogand now through this inspiring new book.

And no, I’m not recommending When God Intervenes just because Dabney flattered me by including a quote from one of my blog posts in the book. I’m recommending this book because reading it encouraged us and increased our faith and hope and I know it will do so for you also.

Over the years I’ve had ALS, I’ve become convinced that for a Christian to retain hope in the midst of a difficult trial, he or she must believe that God allowed the trial for a purpose; a purpose greater than what God would have been able to accomplish in and through that person apart from the trial.

“…even though now for a little while, if necessary, you have been distressed by various trials, so that the proof of your faith…may be found to result in praise and glory and honor at the revelation of Jesus Christ…” (1 Peter 1:6-7)

I think every Christian that goes through a difficult trial will eventually ask “Whyme?”

But, I’ve learned that our motive behind asking this seemingly simple question says a lot about how we view God – and also a lot about how we view ourselves.

The first man asks the question like this: “Why me; out of 7 billion people in the world, why did I get ALS (or whatever)?”

He’s really asking, “Why didn’t God put this horrible trial on one of the other 7 billion people?”

This man has a warped view of God and an exalted view of himself. He views his trial as pointless, and he thinks that he should somehow be exempt from the suffering of humanity.

I know what I said about this first man sounds harsh and judgmental, but I know this man well; in a spiritual and emotional sense, I wrestled with him for several months after being diagnosed with ALS.

Thankfully, with the help of God’s word, wise counsel from Christian friends and a well-timed conversation with our non-Christian next-door neighbors, I began to see that there might be a purpose, an eternal purpose, behind my trial. I defeated that “woeisme” man who was fighting to take control of my thoughts and emotions. (More about our next-door neighbors further down).

This man has the correct view of God and of his place in the world. As a Christian, this man knows that God wouldn’t have allowed this trial unless He had a greater purpose, a purpose that outweighs the suffering this man would have to endure (from his trial).

“And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.” (Romans 8:28)

That verse can only be true if we have an eternal (“BigPicture”) view of our trial. God still heals and performs miracles, and I believe that we should always pray for that result. (Never give up on God doing miracles!)

Regardless of the outcome, God can bring about eternal good from every trial.

In a hundred years, the eternal good that comes from our trial will be the only thing that matters.

A difficult trial (usually) causes the Christian to focus more on the spiritual and the eternal things because, by comparison, the temporal and the material things begin to look more and more insignificant.

Back to our next-door neighbors: Mike and Lorraine were not followers of Christ when we met them. Of course, we did our Christian duty and invited them to church and tried to share the “Goodnews” with them. Even our girls (then 4 and 7) invited them to church, but all to no avail.

Mike and Lorraine later told us that they mocked us in private. I told them that I could relate because, before making a commitment to follow Christ, I mocked Christians too. Let’s be honest, making fun of Christians is so easy.

But, after I was diagnosed, Mike and Lorraine began to reexamine the faith that was sustaining our family through this trial. Lorraine told me:

“…When you were diagnosed with ALS I began to see a man who held no anger with the God that ‘allowed’ this to happen. Then you began to demonstrate trust in God’s plan. I saw your faith and I saw two little girls accept what God was doing in your lives and I began to wonder how such young children could love God unconditionally. I opened my heart first to the possibility that this might be a good thing for me as well. Then I finally got it and allowed my brain to accept the basic truth that God is only good, loving and faithful…”

Mike and Lorraine made a commitment to follow Christ and faithfully attend church and share their faith with others. (Now people probably make fun of them).

Would Mike and Lorraine have made a commitment to follow Christ if we had not gone through this trial? Obviously, only God knows the answer to questions like this. The only thing I know for sure is that this trial has strengthened my faith and has also given me more confidence in sharing that faith.

But, I admit that difficult trials can feel like you’re serving a prison sentence, especially when you have ALS and you’re imprisoned in your own body. However, the Apostle Paul wrote much of the New Testament while imprisoned. And, many of his fellow prisoners and the guards that observed Paul, became followers of Christ. Only Jesus can spread a message of hope through a prisoner – this is truly UnshakableHope!

UPDATE: Sadly, Mike went through a long battle with cancer and is now with Christ in heaven. I am looking forward to seeing him again.

I hope I’ll see you there also.

“Now I want you to know, brethren, that my circumstances have turned out for the greater progress of the gospel, so that my imprisonment in the cause of Christ has become well known throughout the whole praetorian guard and to everyone else, and that most of the brethren, trusting in the Lord because of my imprisonment, have far more courage to speak the word of God without fear.” (Philippians 1:12-14)

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